Bella Update

Just wanted to pass along some great news from Noel.  First part of it is that Noel was able to go to Boston on Friday, and will stay until Wednesday.  Her mother is here in Honolulu caring for Jackson.

But, the best part of the news is that Bella’s surgery is over, they were able to remove all of her tumor, and did it without injuring her kidney.  Thanks be to God!!!

I wrote Noel that we would keep praying for pain control, no infection, a smooth recovery, and rest for all of them.

When good things happen, when the answer is “Yes”, when God comes through…my sails fill with gusts of faith and hope.  Today is a very good day.

 

 

Join Your Prayers with Abbie’s

I want to introduce you to the recipient of some of Abbie’s most fervent prayers recently.  One-year-old Bella Pollard is the daughter of Bo and Noel, who go to our church.  I first met Noel a few years at one of the Beth Moore Bible studies I treasured so much.  I liked her from the start, but upon finding out she was a PICU nurse, I knew she was truly special.

I was thrilled when Bo and Noel were expecting their first baby.  Our Bible study group, demographically at least, leans toward the more mature side…more grandbabies are welcomed than new children.  So, Bella’s arrival was exciting for all of us.

The next Beth Moore Bible study I was able to participate in was a different group, but to my delight, Noel was there, too, accompanied by little Bella.  Noel always brought a “busy bag” of things to occupy Bella during the discussion and video, but look at that face….can you understand why I was distracted by her?  Bella was a beautiful, healthy growing baby…learning to make her way around enough to get her hands on whatever she wanted.

After that study ended, I didn’t see Noel for a while.  It is not uncommon for me to miss church several weeks in a row, caring for Abbie at home.  One Sunday early this summer, I managed to get Abbie and I there on time.  We were sitting in the back row, when I saw Noel walk down the center aisle…in a maternity dress!  Little Bella, pictured here with Noel on her first birthday, was going to be a big sister!

I can’t recall exactly where I was when I got the first email, only that the world started spinning and I had to read it three times.

Bella had a growth in her tummy.  It had been diagnosed as a malignant neuroblastoma.  She would have to undergo several rounds of chemotherapy in preparation for the surgery that would hopefully remove the growth.

Noel’s pregnancy had become a complicated one, and now she entered the unfathomable world of “cancer mom”.  Because of the toxicity of the chemotherapy, which would be shed by Bella during and immediately after the treatments, Noel could not care for her during these periods in order to protect the growing baby.  I could not imagine a more heart-rending position, until recently.

Baby Jackson arrived on October 28th, a chemo day for Bella.   I cannot fathom all the emotions contained in this photograph.  As I write, Bella is with her daddy, Bo, in Boston, awaiting surgery scheduled for Monday.

Having taken that torturous walk to the OR with Abbie numerous times, I cannot begin know what this must be like for Noel — having an entire continent and half an ocean between her and her baby girl at this crucial moment.  Nor can I imagine what Bo is going through, dealing with all of this without his wife and partner there.  And precious Bella….five rounds of chemo, and now this major surgery.

Abbie, and our family, will be praying without ceasing until we hear Bella has come through this smoothly.  Your prayers added to ours would mean so much.

The family is posting updates at http://www.giveforward.com/bella, where you can also contribute financially to help them through this severely challenging time.

I mentioned to Abbie that I was going to be asking you to pray with her, and she was VERY excited about this.  She truly knows the power of prayer.  At Thanksgiving, I was on one side of her, and Ray was on the other.  As we joined hands around the table and began to pray, her whole body relaxed remarkably.  I thought perhaps only I had felt this.  After the prayer, Ray looked over at me and said, “Did you feel that?”

She knows Bella, and the Pollard family, need us…and she knows we can make a difference.  Pray for Bella!

 

 

 

 

 

 

Understanding Abbie

I love to read.

I am not the most cultured student of literature, but I deeply treasure books that take me intriguing places I have never known, or show me the treasured familiar in  new light. My current obsession is anything written by Antoine de Saint-Exupery. In considering why I am so taken with his works, beyond the brilliant writing, I came to one conclusion: he navigated by the stars, in places and situations indescribable to those who’d never been there. My life often feels like that.

Monsieur Saint-Exupery gives voice to many of my emotions about this journey with Abbie, in words more beautiful and succint than I ever could have chosen. There are two other books, however, that, in my eyes, give voice to Abbie herself. If you want to understand her life of overcoming, savor the two books I recommend below.

Out of My Mind

I am blessed to have Maia Rosen, the librarian at Hanahouoli School, as a friend.  I am forever asking her for recommendations for both my voracious reader/listener (Abbie), as well as my reticent readers (the twins).  One day, she dropped Out of My Mind off at my house, saying that she thought of Abbie the whole time she read it.  A quick glance at the book cover had me hooked:

“Eleven-year-old Melody has a photographic memory. Her head is like a video camera that is always recording. Always. And there’s no delete button. She’s the smartest kid in her whole school—but NO ONE knows it.

Most people—her teachers and doctors included—don’t think she’s capable of learning, and up until recently her school days consisted of listening to the same preschool-level alphabet lessons again and again and again. If only she could speak up, if only she could tell people what she thinks and knows. But she can’t. She can’t talk. She can’t walk. She can’t write.

Being stuck inside her head is making Melody go out of her mind—that is, until she discovers something that will allow her to speak for the first time ever. At last Melody has a voice . . . but not everyone around her is ready to hear it.

“This sounds just like Abbie!” I thought.  The accuracy of Ms. Draper’s story could only have come from a mother of a disabled child, which she is.  I read it in one sitting.  It is the best description I have ever read of Abbie’s life, her hopes, her frustrations, her potential, and what we all risk missing when we see through people who cannot speak.

Each of Abbie’s nurses has read it, and I’ve given copies to school personnel as well.  I think sometimes it helps to hear it from a different voice, even if this is “fiction”…I would label this book “composite non-fiction” instead.  Melody may not be an actual person, but rather thousands of people with so much treasure locked in their heads and hearts.

Many people over the years have recommended The Diving Bell and the Butterfly, but for some reason I resisted reading it.  In fact, I don’t think I mentally processed what they were saying about it, because until I bought it recently, I didn’t realize it was written by a very successful man, felled by a stroke, suffering from Locked-in Syndrome.  Although this is not technically what Abbie has — she is blessed with more movement and ability to express herself — M. Bauby’s painstakingly dictated memoir is another window into Abbie’s day-to-day life.  I often wonder what her nicknames for people are…although her facial expressions certainly betray whether they are positive or negative!  I worry that she suffers irritations, aggravations, and discomfort that we brush past because she cannot vocally complain.

M. Bauby, a former editor of the French edition of Elle magazine, had a voluminous memory to mine in escaping his body through imagination, remembrance, and mental activities.  I wonder how Abbie flees her diving bell….what are the imaginings of a ten-year-old who hasn’t run in seven years, who hasn’t eaten, sung, or laughed heartily in that long.  What scripts does she use?  I hope desperately one day to hear her stories, not only to experience again the divine symphony of her voice, but because the adventures of her mind, her freedom gained on night’s downy wings, her utterly unique perspective on life and love will be unlike anything my ability-bound ingenuity could conceive.

Mrs. Draper’s book is the anthem I would like to sing boldly to everyone who ever meets Abbie. “SEE HER!!”

Monsieur Bauby’s book felt like Abbie whispering in my ear.  Quiet, personal, profound.  An exquisite gift given at an exceedingly high price.  I will treasure his words, strength, and courage forever.

Until Abbie can speak completely for herself, I am grateful to have these books to bring her messages to my heart….and yours, if you choose.

I am writing this on Thanksgiving night.  Abundance.  That is the word that comes to mind as I close my eyes to reflect on this day, my life, and my blessings.  I shared dinner this evening with  a woman from California who said, “I still pray for Abbie every day.  She is at the top of my prayer list, so she always comes at the beginning of my prayers.”

I was humbled and grateful to hear this, and thanked this faithful woman. at the same time recognizing her as symbolic of you…so many who lift Abbie and our family in prayer.  We are profoundly thankful for you, and hope that this Thanksgiving finds you with peace, joy and hope in your heart and home.

God bless our troops who are away from their families this day….may He keep you in safety and health until you return.  Your nation is grateful!

 

Catching up on Photos

I did, in fact, find my camera cable.  So, I want to share some photos from the wheelchair fitting process.  Video will be tomorrow’s project!

Chair without seatThis is what Abbie’s wheelchair looked like without the seat attached.  The foam wedge is there to give her an “open hip angle”.  In other words, the only way Abbie can really sit at 90 degrees of hip flexion is to collapse into her abdomen and roll onto her sacrum.  Not good.  So, instead of fighting this, the goal of this chair and seating system is to meet her where she is at — putting her into a comfortable, stable position, while supporting her optimally.

 

 

Seat

This is a front view of the seating system.  Notice how different each side of the back support look, yet this shape puts Abbie into a good midline position.  This seat was produced after a mold was taken of her body from the upper back through the mid-thigh.  Although it is custom-molded, there was still much work to do to get it to fit Abbie perfectly.  Because it is, in essence, an orthotic, the fit had to be perfect, otherwise we risked Abbie developing skin injuries.

 

 

Skin checks

Lynette, Abbie’s PT, took pictures of her skin before and after each seating trial. We would put Abbie in the chair for 30 minutes or so to see how she would react.   Also in this picture is Abbie’s nurse, Auntie Alicia.  Abbie spent a lot of time on this massage table over the course of the fitting, but never complained.

 

Marking bottom cushion

After the first seating trial, we determined that the seat needed to be trimmed just a bit.  It is constructed of little balls that, together, feel somewhat like a stiffer version of memory foam.  The materials allow air to circulate through the seat, which will be fantastic for Abbies skin.

 

 

Lipstick marking

This photo records my biggest sacrifice in the process.  In order to carve out the places in the seat causing hot spots on Abbie’s skin, we had to correlate the positions on the seat exactly to the red spots on Abbie.  The best way to do this was to mark the skin spots, with my favorite lipstick, and then put Abbie back in the chair, allowing the lipstick to transfer to the areas on the chair that needed trimming.  It was a very efficient process, and after carving out the discolored areas on the seat, Abbie’s skin looked much better in the following seating trial.  Aloha, Viva Glam…I still miss you!

 

Seat pan

The seat without the bottom cushion.  It was most likely being worked on post-lipstick test.  It seemed to me that even the hardware (metal seat pan and metal seat back) were custom-molded for Abbie’s unique shape.  Getting this seating system was absolutely worth the wait, the fight, the faith…it is going to change how she interacts with everyone and everything, and keep her healthy in the process

 

 

 

blowtorch

The seat back being tweaked a bit, to account for hot spots on Abbie’s ribs.  Felt more like Monster Garage, with the blow torch and all manner of power tools.  You can see the seat back is composed of materials similar to the seat bottom, along with some extra padding.  This seat will allow for some adjustment as Abbie grows.  We are hoping it will last for 3 years.

 

topdown view

This view captures well the amount of technology on this chair.  Abbie will drive the chair forward with the sensor located just behind her head.  Left and right turns will be initiated with the sensors on either side of her head.  This head array can also be used to operate a dynamic (tablet-computer like) voice-output communication device.  She also uses these sensors to tilt her chair, raise her leg rests, and elevate the chair.  She will also have the ability, eventually, of using them to control a computer mouse.  As involved as it may look, to me it is very simply a key to the world for Abbie.

 

Tucker

Abbie’s old friend, Tucker, stopped by on the third day of the fitting.  He was a welcome respite from the boredom for Abbie.  She is laying behind him on the mat table, with Genevieve.

 

 

 

 

 

Abbie waiting

Abbie, waiting patiently, right after Tucker’s visit.  She was such a trooper through these long days.  She sure doesn’t look, in this picture, like she would be in the PICU two days later, does she?  We were all taken by such surprise when she got so ill so quickly.  I am thankful that as I write this, I have the girl in the picture back.

 

 

 

 

First ride home

The first ride home.  Eydie, Abbie’s OT is casting a careful eye over her as we load this new chair for the first time.  I was VERY much a novice driver, so it wasn’t so easy to figure out how to best get in the chair into the van the first time.  I must say I have improved since this day.  We were thrilled to see Abbie looking straight forward, instead of at the boring old roof of the car.

 

 

The fitting process with the chair continues yet.  Abbie’s illness immediately after the chair was delivered delayed the follow-on appointments.  We are finding the most challenging issue to be the headrest (the story of our life with wheelchairs in general).  Until we can get it to a perfect, stable position, Abbie will not be able to access the driving features of the chair.  We are hoping to have this completed in the next couple of weeks.

 

In the meantime, however, she is absolutely loving her new chair, anyway.  The positioning is so incredible that she really doesn’t want to come out when it is time to move.  When she is in this chair, you just see her, not the chair, not a stoller, not 14 positioning pillows.  Just beautiful, amazing her.  We are so grateful.

Other things:

The Chest Vest has helped Abbie’s recovery immensely.  Here are some photos of our new, powerful ally:

Chest Vest Machine

This is the actual machine.  It is very easy to program and run.  Of course, when we got it, it was institutional beige.  Inside the instructional packet, however, was information about Skin-Its made just for the Chest Vest.  Well, if I could make the thing pink and have one of Abbie’s favorite verses on it….how could I resist?

 

Abbie getting a Chest Vest treatment.  The machine forces air through the tubes, at pressure and frequencies that we set, for 14 minutes.  She absolutely loves this…I think it feels like a massage to her.  We do this three times a day, after which we put her prone on the massage table to help drain the secretions loosened by the treatment.  We love you Hill-Rom!!

 

Neb Tx

Abbie getting her nebulizer treatments.  Morning and evening she gets Albuterol (to open things up), followed by Pulmozyme (secretion thinner), then the Vest, followed by Pulmicort (like Albuterol, but long-acting).  I was surprised when told how long it would probably take her to get over the pneumonia in September.  But, Dr. Harrington was right.  It has just been this week that she is really, really better.

 

Abbie Kyle leaving for college

Kyle, Abbie and I — the day Kyle left for college.  Very bittersweet for me, as these two were exceptionally close before Abbie’s injury.  I grieve for what they’ve missed out on together these last years, and I wonder how their relationship will go and grow from here.  But, I trust that hearts that love each other like this pair do, will always find a way back together.

 

 

 

Kyle SPU

Kyle, at his new home.  But, still bringing the Aloha Spirit with the shaka…love that.  I am so happy he is at SPU, and look forward to watching his life unfold and his spirit be refined in the coming years.

 

 

 

 

Kyle Mom Gasworks

At Gasworks Park, the evening I left him at college.   Love this boy madly!!

 

 

 

 

 

Chase SCU Reunion

In early October I went to my 20th year reunion at Santa Clara. Seeing Chase was a wonderful bonus! Here we are with Donna and Laura, my college roommates, who babysat Chase from the time he was a newborn until he was six months old. A lot has changed since then!

 

 

 

So…we are all caught up – – photowise, at least.  Much more to say, but Abbie’s horse, Lizzy, awaits.  Off to Da Ranch we go!

God Bless!

A Most Beautiful Butterfly


It’s always hard, as Halloween rolls around, to figure out how to include Abbie in a way she will enjoy.  She loves dressing up, and can’t get enough of sparkles, ribbons and rhinestones.  Sitting in a wheelchair, however, does not lend itself to the ornate costumes I know she would adore.

The solution?

Make the wheelchair part of the costume — or at least the podium for it.  This year we went with a butterfly theme, and made her new wheelchair into what looked like a float.  We braved the crowds at Kahala Mall, just to allow her to hear “Wow!  She is so beautiful” over and over again.  Soooo worth it!

Abbie with Steven, a young man with Cerebral Palsy. He calls Abbie "Baby Girl", and was quite surprised by how she had transformed. Behind them are Genevieve and Steven's caregiver, Conrad. They all see each other almost every evening at the mall.

In a way, I think that for one special night, what is on the inside of Abbie was glowingly, brilliantly apparent to everyone.  Truly, a most beautiful butterfly.

 

Tribe Weekend

Group Shot

Near-Drowning Tribe 2011. The fiercest, most tender women you could ever hope to meet.

Tribe Weekend 2011, otherwise known as 2nd Annual Near-Drowning Mom’s retreat, surpassed even the expectations built from last year’s incredible experience.  We had 10 “alumni” moms, and added 5 more this year.  We also added a couple of new states – Wisconsin and Michigan.

I feel fortunate to have a “tribe sister” in my own state (actually, practically in my neighborhood.)  On the way home Kehau and I  talked about the dynamics of our group, and both found it interesting that in almost any other social group of women you are all either at a similar place in life, have similar personalities, or many friends in common.

There is only one brutal thing linking the Tribe together.

As individuals we are so different – running the gamut from outgoing and loud  (some would say obnoxious at times:), to thoughtful and reserved.  We range in age from 24 to late 40s, and from being the mom of one to the mom of seven.  And yet, we fit together so perfectly, and can enjoy each others differences so honestly that the ending of the weekend brings a surge of despair.

It’s as if you have found the most perfect, comfortable pair of jeans. They just fit.  You get to live in them for a weekend, and then they must go back on the shelf for another year.

No one would ever, ever choose to join our tribe.  The initiation is hellish, the responsibilities of membership profound.

Our children, through their grit, determination and resilient commitment to life have chosen us for this journey, for this sisterhood.  We try daily to honor their courage and support their spirits…and I think, in return, we have been given each other, as companions, cheerleaders, and silent, knowing witnesses.

I am so incredibly blessed to be part of this Tribe.

Trio of friends

My long-time companions on this journey: Teresa Jewkes, Sue Searles, Annie Pettigrew

 

Leavenworth color

A beautiful time of year to visit the Bavarian-themed town of Leavenworth.

Black Diamond Room

Sunday Lunch at Swiftwater Cellars Winery

 

Sue and Tiff

Sue Searles and I at the winery. Her son, Luke, drowned three months after Abbie, and we have been friends since shortly after that. An incredible woman!

 

Annie and Tiff

Annie's daughter, Isabelle, drowned 13 days after Abbie. We are the only two tribe members whose miracle children are daughters. Words cannot express how tightly our hearts are bound, but I am so thankful to have Annie in my life.

 

Annie and Tiff boots

I cherish this photo becuase it captures so well Annie and I walking through this adventure together.

Crazy Pic

Our real personalities emerge....this is a pretty accurate represention of the weekend. Not a lot of sleep, nor peace and quiet. A WHOLE lot of laughter and fun!

Fall color

Autumn unfurling her colors was a special treat. One of the very few downsides of living in Hawaii is missing this spectacular show.